Past Meetings

Thurs, Oct 8, 2020 ZOOM @7 Speaker: Dr. Eric Molho

Speaker: Dr. Eric Molho 

Dr. Eric Molho is Director of one of the only comprehensive Movement Disorders and Parkinson’s Disease Centers in New York State. His practice is almost exclusively devoted to treating Parkinson’s disease, tremor, and dystonia, as well as other movement disorders. Dr. Molho has served as the principal investigator on numerous clinical trials for Parkinson’s disease, enabling him to offer the most advanced treatments and knowledge to his patients. 


Announcements and notes for meeting



Oct 8, 2020 Notes

Notes from 10/8/2020 meeting

Welcome

Welcome new members and visitors

Gratitude for our Doctors at the MD Center at AMCH and our PD community

Next meetings will be:

Community

Last year 10 people from the Albany area PD community travelled to Tokyo to attend the 5th WPC.  We bonded, learned and saw the sights.

Save the date

Will you join us at the 6th World Parkinson Congress to be held in Barcelona, Spain from June 7– 10, 2022. More than 3,000 people from 60+ countries are expected to attend the WPC 2022. Delegates will be those who are dedicated to understanding, researching, treating, and curing Parkinson’s disease (PD), including those who are living with it.

Nancy Eson: We would like to gage interest in a  care partner support group. If you are interested in knowing more, joining or leading this type of group, contact us through the website https://www.cdparkinsons.org/

Dr. Molho will take questions through chat.  You will be muted to avoid distractions.

Dr. Molho has graciously agreed to be speaker at our October meeting for at least the last five years (I don’t have records before that) and has been an excellent source of PD education for us.

Dr. Molho is the director of the Parkinson's Disease and Movement Disorders Center and currently serves as a professor of neurology and the Riley Family Chair in Parkinson’s Disease.

Dr. Molho (thank you William for the fantastic notes)

William’s notes on the Capital District Parkinson’s Disease Support Group meeting, Thursday, October 9, 2020:

Turnout: At one point we were at 45 Zoom screens, representing  60-70 people. I don’t know where we’d put everyone in a face-to-face meeting ;-)

WPC 2022: Dr. Molho promoted the next World Parkinson’s Congress, to be held in Barcelona June 7-10, 2022.

COVID-19 and PD: Dr. Molho’s office gets updates 2X a week on NYS and local Coronavirus and Covid-19 numbers. The state continues to report low rates of infection and hospital admissions, but Eric reminded people to stay vigilant and not get lax on prevention and protection measures. Some parts of the state are reporting new spikes and clusters. People with PD are reported to be at higher risk, but that is likely more due to age and other risk factors than due to PD by itself. People must assess their own level of comfort with risk, and use common sense when determining how physically intimate to get with grandchildren and other loved ones.

COVID-19 and ongoing PD treatment at Albany Medical Center: Ninety percent of consultations are currently in-person at the Mov’t Disorders Center. Of course, that number could change if the pandemic environment changes in the Fall and Winter. All safety and prevention protocols are being strictly observed. Nursing homes and hospitals have normalized their visiting policies, a loosening from the lockdown of the early months of the pandemic starting in March 2020.

Effects of pandemic on ongoing PD research & clinical trials at AMC: The initial lockdown bogged down such projects, as suddenly extra precautions and risk reduction had to be rushed into place for everyone. Things have started up again, however. For comprehensive list of clinical trials, see website  https://clinicaltrials.gov/ referenced in the Chat below. Here is a summary of Dr. Molho’s discussion of the major studies going on at Albany Med:

— The KARMET Study (aka the "Poop Study") on constipation and PD, being conducted with the firm Enterin Inc., looking at early involvement of the enteric nervous system in PD. This is a novel therapy, involving a compound that interacts with alpha synuclein protein. For more information or if interested in participating, contact Dr. Molho’s office.

— Motor Fluctuations Study, looking at “On/Off” states and working on treatment to level out the fluctuations. Could involve a combination of long-acting Levodopa and short-acting Levodopa. This would be an improvement on the currently-prescribed drug Rytary. The monitoring of symptoms by participants in this study is demanding, Dr. Molho said.

— Trial of a completely new drug, Cerevel, specific to the D-1 receptors. This study is just getting off the ground

— Federally-funded study to develop automated way of looking at brain MRIs to try to more accurately distinguish PD from other neurodegenerative disorders like PSP and MSA.

— A Study to Evaluate the Efficacy of Prasinezumab (RO7046015/PRX002) in Participants With Early Parkinson's Disease (PASADENA)

https://clinicaltrials.gov/ct2/show/NCT03100149

**N.B.: You can get a sheet from the AMC Movement Disorders Center listing and describing all the clinical trials Albany Med is involved in for PD and other neurological disorders.**

Q&A with Dr. Molho: Exercise, exercise, exercise. “There is no proven way to slow the progression of PD other than exercise.” A mixture of aerobic and resistance training. Stationary bikes, yoga etc. etc. Importance of finding an exercise activity you enjoy — otherwise you won’t do it.

Stem cell treatments: Some exciting prospects but even more unknowns and unintended outcomes

Probiotics and probiotics for constipation: Can work for some people but not for others.

— 30 —

Annotated chat below:

18:56:55  From  Carissa O'Rourke : I am doing LSVT but will be going out on maternity leave next week. There is a physical therapist at Albany memorial doing it. her name is Janet and we’ve been working together

19:10:49  From  Manuel Cruz and Suzanne Roberson : Can Dr. Molho speak to the benefits of exercise?

19:11:12  From  Thomas Estep  to  Nancy and Jud(Privately) : My name is Thomas Estep, I am a representative with Amneal Pharmaceuticals in Albany.  I can have speakers present at other meetings. My email is Thomas.estep@amneal.com.  518-506-8930.

19:30:06  From  Kristi LaMonica : Are new clinical trials listed on the AMC movement disorders webpage?

19:34:46  From  Nancy and Jud : https://clinicaltrials.gov/

19:40:23  From  Nancy and Jud : https://www.nourianz.com/ ?

19:49:22  From  Steve & Tracy : what is the value of the https://www.apdaparkinson.org/article/what-is-a-datscan-and-should-i-get-one/

19:49:49  From  Steve & Tracy : what is the unified Parkinson rating scale? https://en.wikipedia.org/wiki/Unified_Parkinson%27s_disease_rating_scale

19:51:26  From  Kristi LaMonica : will AMC be part of the monoclonal studies? Also for the D1 drug, a patient can’t be on meds at all?

19:51:27  From  Steve & Tracy : what in the digestive tract causes the growth of alpha-sinucleans?

19:57:39  From  Bruce Plotsky : What are your thoughts on 'young plasma'? https://parkinsonsnewstoday.com/2020/07/22/young-plasma-infusions-safe-potentially-helpful-parkinsons-patients-phase-1-trial/

20:01:08  From  Steve & Tracy : if someone exercised 30 min/day before being diagnosed, should they increase the intensity and/or daily duration after diagnosis?

https://www.parkinson.org/Understanding-Parkinsons/Treatment/Exercise

https://davisphinneyfoundation.org/high-intensity-exercise-slows-parkinsons-progression/

20:03:33  From  JoAnne Stanoski : could you, please discuss stem cell, laser treatment & the use of oxygen ( hyperbaric ) treatment for park. thanks

20:07:16  From  JoAnne Stanoski : as an FYI for everyone, I did a probiotic regime a while ago & now have no problem/issues w/constipation.

20:09:21  From  Manuel Cruz and Suzanne Roberson : Any promise from fecal transplants?

20:13:14  From  JoAnne Stanoski : are there any new things  (treatments) going on in Europe that we don’t have here?

20:22:46  From  Victoria Plotsky : Thanks Dr Molho!! : )

20:23:02  From  Carissa O'Rourke : thank you! great information

20:23:40  From  Kristi LaMonica : Thank you!


Thurs. Sept 10, 2020 ZOOM @7 - Care Management: Strategies for Successful Aging

Care Management: Strategies for Successful Aging

Hear how working with an Aging Life Care Professional (ALCP) can offer you optimal success in identifying and planning for the many potential challenges of aging. A care manager can help ensure the quality of life you choose to create and minimize the need to face crises unprepared.

Presenter: Tanya Zelman Schwartz, LCSW-R, C-ASWCM, Care Manage for All LLC.


Tanya Schwartz, LCSWR, C-ASWCM

Advanced Professional Member of ALCA

Care Manage for All, LLC.

518-512-9679

TanyaZelmanSchwartz@gmail.com

Thurs. August 13, 2020 ZOOM @ 7 - Sunnyview Rehabilitation Hospital’s Driver Rehabilitation Program.

Speaker: Donna Stressel, OT, of Sunnyview Rehabilitation Hospital’s Driver Rehabilitation Program.

Multiple studies have shown that drivers over age 60 are generally some of the safest on the road. They are more likely to avoid unsafe behaviors such as speeding, driving under the influence of alcohol, talking on cell phones, and not wearing seat belts. That said, it is important for elderly drivers, and their loved ones, to make sure they are road-ready and driving as safely as possible. 


Sunnyview Rehabilitation Hospital’s Driver Rehabilitation Program offers a comprehensive array of services for elderly drivers, adolescents with learning needs, and the disabled, including clinical assessment, on-the-road evaluation, driver rehabilitation and consultation/education about adaptive driving services. For more information on the program or CarFit programs in the area, call 518-386-3601.


You must register in advance to attend this meeting.


-----------

Resources

Parkinson.org

https://www.parkinson.org/Living-with-Parkinsons/Managing-Parkinsons/Activities-of-Daily-Living/Driving


Davis Phinney

https://www.davisphinneyfoundation.org/blog/how-long-can-i-keep-driving-if-i-have-parkinsons/


M.J. Fox

https://www.michaeljfox.org/news/ask-md-driving-and-parkinsons-disease


Jul 19, 2020

Sunday, July 19, 2020 – Summer Picnic – CANCELLED

Summer Picnic – CANCELLED


The Town of Colonie has cancelled all pavillion reservations for the summer.


Thurs. July 9, 2020 ZOOM @7 - Martel Catalano - founder of Beyond My Battle

Martel Catalano - founder of  https://www.beyondmybattle.org 

BMB provides support services and educational resources to foster engaged coping methods such as introspection, communication, and self-care.  Martel will speak about the founding, philosophy and services provided by the organization.


You must register in advance to attend this meeting.

Jun 25, 2020

June 25th meeting Topic - "PARKINSON’S IS STRESSING ME OUT!"

How stress and anxiety are related to Parkinson’s and what you can do about it.

We will discuss these two short articles and we will share our own ideas about handling stress.

1. https://www.apdaparkinson.org/article/stress-anxiety-parkinsons-disease/

2. https://www.parkinson.org/pd-library/fact-sheets/Stress-Management-for-PD

You must Register in advance for this meeting

After registering, you will receive a confirmation email containing information about joining the meeting

Jun 11, 2020

June 11, 2020 7PM ZOOM meeting – Speaker: Ella DiPietro, owner of Saratoga CBD Co.

Meeting notes:

Speaker: Ella DiPietro, owner of Saratoga CBD Co.

her website: https://saratogacbdco.com/ 


ADPA Statement about medical marijuana CBD and PD

https://www.apdaparkinson.org/article/medical-marijuana-and-parkinsons-disease/


MJ FOX

https://www.michaeljfox.org/news/ask-md-medical-marijuana-and-parkinsons-disease


Davis Phinney

https://www.davisphinneyfoundation.org/blog/new-research-medication-and-cbd-oil-in-parkinsons-with-dr-trevor-hawkins/

  • Using CBD oil to treat symptoms of Parkinson’s is becoming more and more common; however, the lack of oversight and inconsistency from batch to batch are big problems

  • There’s a trial going on at the University of Colorado right now for a CBD pill to treat Parkinson’s tremor

  • The biggest hurdle for CBD studies is that there’s no monetary support – unlike the money that big pharma companies get

  • If you want to experiment with CBD oil, make sure that you tell all of your providers about it because there can be serious drug interactions and be aware that each batch you get can be very different

NIH.GOV (National Institute of Health)

https://search.nih.gov/search?utf8=%E2%9C%93&affiliate=nih&query=cbd&commit=Search


FDA

https://www.fda.gov/consumers/consumer-updates/what-you-need-know-and-what-were-working-find-out-about-products-containing-cannabis-or-cannabis


medlineplus

https://vsearch.nlm.nih.gov/vivisimo/cgi-bin/query-meta?v%3Aproject=medlineplus&v%3Asources=medlineplus-bundle&query=cannabidiol+%28cbd%29




Project CBD (mentioned b Ella and links to her company)

https://www.projectcbd.org/guidance/get-started

"Project CBD was established in 2009 by journalists who had been covering the medical marijuana story—the science, the movement and the industry. "




May 28, 2020

May 28, 2020 @ 7 PM

ZOOM discussion: Creativity has been shown to be helpful for people with Parkinson’s.  Let’s share and learn about how our creative pursuits impact us.

We recommend, but don’t require, reading the articles linked below.

You must Register in advance for this meeting


After registering, you will receive a confirmation email containing information about joining the meeting.

May 14, 2020

May 14, 2020 – 7 PM ZOOM meeting. Speaker: Lynda Shrager - Author, occupational therapist, social worker

ZOOM meeting. Speaker: Lynda Shrager - Author, occupational therapist, social worker and a Certified Aging in Place Specialist – Topic: Simple modifications that can help seniors make their homes safer and easier to navigate etc.. You must register to attend this meeting. Join our mailing list for meeting invitations.


Find her book here - https://www.goodreads.com/book/show/36205917-age-in-place

May 7, 2020

CANCELLED: This previously announced ZOOM Meeting has been cancelled

30-Apr-2020

Thursday, April 30 2020 – 7 PM ZOOM meeting. You must register to attend this meeting.

Location: from your smart phone, tablet, computer. or audio-only telephone dial-in. Bring your own refreshments.

The topics for discussion will be up to you. 

Do you know a person who will help make my home accessable?

Do you know a person who will help make a financial or estate plan?

Coping with social distancing? 

Access to medications, health care? 

Can someone offer to help me with ____? 

Can I offer to help someone else with ____? 

What to do while keeping social distance? 

Can you share a song, a joke, a poem, a story, a picture, a recipe, a meditation? 

We all gain by continuing social interaction, and we can still see and talk to each other by joining a scheduled internet video ZOOM meeting.


You must register to attend this meeting. Registration infirmation will be sent by email to addresses on our list.

16-Apr-20

April 16, 2020 7 PM- ZOOM meeting

April 16, 2020 7 PM- ZOOM meeting

April 2, 2020 Meeting – on-line ZOOM meeting

April 2, 2020 Meeting – on-line ZOOM meeting

March 26, 2020 07:00 PM – ZOOM get together

March 26, 2020 07:00 PM – ZOOM get together

March 19, 2020 – on-line ZOOM meeting

March 19, 2020 – on-line ZOOM meeting

March 12, 2020 – meeting – CANCELLED. Beverwyck meeting room closed due to virus precautions

March 12, 2020 – meeting – CANCELLED. Beverwyck meeting room closed due to virus precautions

Saturday, February 15, 2020 at 2:00PM Meeting. LSVT BIG

Saturday, February 15, 2020 at 2:00PM Meeting. LSVT BIG

Saturday, January 11, 2020 at 2:00 PM Meeting – DBS

Saturday, January 11, 2020 at 2:00 PM Meeting – DBS

Saturday December 14, 2019 – Holiday Get Together

Saturday December 14, 2019 – Holiday Get Together

November 14, 2019 – Meeting. Topic Rytary Taking “ON” Parkinson’s Disease Presentation by Duarte Machado, MD

November 14, 2019 – Meeting. Topic Rytary Taking “ON” Parkinson’s Disease Presentation by Duarte Machado, MD

October 10, 2019 – meeting – Dr. Eric Molho

October 10, 2019 – meeting – Dr. Eric Molho

September 12, 2019 Meeting – Recognizing OFF Periods Dr. Durphy, INBRIJA

Recognizing OFF Periods Dr. Durphy, INBRIJA

Mike Rosa, David Wagoner, Acorda

August 11, 2019 – Summer Picnic

August 11, 2019 – Summer Picnic

July 11, 2019 meeting – Reflections from the World Parkinson’s Congress in Kyoto Japan

July 11, 2019 meeting – Reflections from the World Parkinson’s Congress in Kyoto Japan

June 13, 2019 meeting – Michael Burns -Mop & Company, will lead us in improv comedy.

June 13, 2019 meeting – Michael Burns -Mop & Company, will lead us in improv comedy.

May 9, 2019 Meeting – Dr. Robert Fekete, Movement problems in Parkinson’s Disease. With Brian Bennati Adamas Pharmaceuticals, Inc.

May 9, 2019 Meeting – Dr. Robert Fekete, Movement problems in Parkinson’s Disease. With Brian Bennati Adamas Pharmaceuticals, Inc.

14-May-20

April 11, 2019 – Meeting – Albany County Department for Aging

April 11, 2019 – Meeting – Albany County Department for Aging

March 14, 2019 Meeting – Deb Foss – Yoga

March 14, 2019 Meeting – Deb Foss – Yoga

February 14, 2019 meeting – Tom Ford – Massage thera

February 14, 2019 meeting – Tom Ford – Massage thera

January 10, 2019 meeting – Susan C. Hare, Albany ENT Speech, Swallowing,Voice

January 10, 2019 meeting – Susan C. Hare, Albany ENT Speech, Swallowing,Voice

December 8, 2018 – Holiday get together

December 8, 2018 – Holiday get together

November 8, 2018 meeting – LSVT BIG and Physical Therapy?? : Sarah Gutenmann.

November 8, 2018 meeting – LSVT BIG and Physical Therapy?? : Sarah Gutenmann.

October 11, 2018 meeting – Dr. Eric Molho

October 11, 2018 meeting – Dr. Eric Molho

September 13, 2018 meeting – DBS – Dr. Jennifer Durphy, with Christopher Henessay representing Abbott Infinity

September 13, 2018 meeting – DBS – Dr. Jennifer Durphy, with Christopher Henessay representing Abbott Infinity

August 9, 2018 – meeting – Rachel Kurtz – Holistic Health Coach

August 9, 2018 – meeting – Rachel Kurtz – Holistic Health Coach

July 21, 2018 – Saturday – summer picnic at Crossings Park in Colonie.

July 21, 2018 – Saturday – summer picnic at Crossings Park in Colonie.

June 14, 2018 – meeting – Chrissy Stack – MedRhythms music therapy.

June 14, 2018 – meeting – Chrissy Stack – MedRhythms music therapy.


​Chrissy Stack, MS, MT-BC, NMT/F, CBIS

Neurologic Music Therapist Fellow

Business Development Manager

MedRhythms, Inc.

ACBIS Board of Governors

Mobile: (518)-573-1554

cstack@medrhythmstherapy.com


More 


https://www.cdparkinsons.org/events/June-14%2C-2018-%E2%80%93-meeting-%E2%80%93-Chrissy-Stack-%E2%80%93-MedRhythms-music-therapy.

May 10, 2018 meeting – topic – Laughter is the best medicine – Michael Burns

May 10, 2018 meeting – topic – Laughter is the best medicine – Michael Burns

11-Jun-20

April 12, 2018 – Meeting – Caregivers share questions and experience separate from people with Parkinson’s

April 12, 2018 – Meeting – Caregivers share questions and experience separate from people with Parkinson’s

March 8, 2018 – Meeting – Dr Jennifer Durphy – anxiety and depression in P

March 8, 2018 – Meeting – Dr Jennifer Durphy – anxiety and depression in P

February 10, 2018 – Meeting – Steve Hovey – Davis Phinney Foundation Ambassador : A wellness approach to dealing with Parkinson’s

February 10, 2018 – Meeting – Steve Hovey – Davis Phinney Foundation Ambassador : A wellness approach to dealing with Parkinson’s

January 13, 2018 – Meeting – Topic : Rachelle Smith-Stallman, Dance Through Parkinson’s instructor

January 13, 2018 – Meeting – Topic : Rachelle Smith-Stallman, Dance Through Parkinson’s instructor

December 9, 2017 Holiday Get Together

December 9, 2017 Holiday Get Together

November 9, 2017 – Meeting : Topic : Open discussion about living with PD.

November 9, 2017 – Meeting : Topic : Open discussion about living with PD.

October 12, 2017 – Capital District Meeting Notice – speaker – Dr. Eric Molho

October 12, 2017 – Capital District Meeting Notice – speaker – Dr. Eric Molho

September 14, 2017 – meeting notice -LSVT BIG

September 14, 2017 – meeting notice -LSVT BIG

August 10, 2017 – Using Technology to Help Manage Parkinson’s

August 10, 2017 – Using Technology to Help Manage Parkinson’s

July 6, 2017 – Meeting cancelled. No meeting in July – picnic at the Valley Cats baseball game instead

July 6, 2017 – Meeting cancelled. No meeting in July – picnic at the Valley Cats baseball game instead

June 8, 2017 Meeting – Karen Wood from PharmaCannis Medical marijuana

June 8, 2017 Meeting – Karen Wood from PharmaCannis Medical marijuana

May 11, 2017 meeting – DUOPA – Heintje Calara

May 11, 2017 meeting – DUOPA – Heintje Calara

April 13, 2017 Speaker – Lynda Shrager – safely access and navigate homes

April 13, 2017 Speaker – Lynda Shrager – safely access and navigate homes

March 9, 2017 Beverwyck meeting – Dr. Vishad Sukul on DBS

March 9, 2017 Beverwyck meeting – Dr. Vishad Sukul on DBS

December 10, 2016 – SATURDAY @ 1-4 PM – Holiday Party

December 10, 2016 – SATURDAY @ 1-4 PM – Holiday Party

November 10, 2016 – Meeting – Tips from Physical and Occupational Therapists provided by Noto Physical Therapy.

November 10, 2016 – Meeting – Tips from Physical and Occupational Therapists provided by Noto Physical Therapy.

October 13, 2016 – Meeting – Nancy Janosi of the Bethlehem Y – an Intro to PD Wellness

October 13, 2016 – Meeting – Nancy Janosi of the Bethlehem Y – an Intro to PD Wellness

September 8, 2016 Meeting – speaker Dr. Molho

September 8, 2016 Meeting – speaker Dr. Molho

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We are in Albany, NY

cdparkinsons@gmail.com

518-281-3466 - Jud

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